Are these Lyme symptoms?

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fibrogal
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Date Joined Aug 2009
Total Posts : 9
   Posted 8/11/2009 9:09 PM (GMT -6)   
Can I take a bit of your time here?

My mother suggested I might have Lyme's, not Fibromyalgia.
Then a young woman recently told me how she had lost her mother to undiagnosed Lyme's.

I am 55.

I was diagnosed with Fibromyalgia years ago
by a respected rheumatologist.

but I have all kinds of other things. . .
tingling and numbness in fingers
constant pain across my upper back,
extreme night sweats,
extreme tenderness in feet, tips of toes
failing eye sight,
hard lumps on my finger and toes
pain in bladder
pain in GI
debilitating fatigue
extreme mental fog and memory loss
(and used to be a college professor)

emotions run from hopelessness
to anxiety, to paranoia, to anger . . .

RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 8/11/2009 9:28 PM (GMT -6)   
fibrogal

welcome to the board, i am sorry your sick. and if its possable you may want to seek a LLMD. as they can answer many of your questions and check you best for lyme. you do have many of the sx for lyme tho.

wishing you the best.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 8/11/2009 9:45 PM (GMT -6)   
sounds like lyme to me, but it could be other stuff also.. do the WB test through IGENEX and see. doesn't hurt!

fibrogal
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/11/2009 10:07 PM (GMT -6)   
Now I have to go to the list of abbreviations and see what LLMD, WB and IGENEX are! ;)

Seriously, THANKS!!, I'll get right on those.
Just sent an email to the turn the corner folks to find a local lyme disease doc.
Will check out IGENEX now.

I was pretty horrified when the young woman told me that her mother, my age, was tested years ago, but it came back negative so they didn't test again. Her husband finally demanded more tests and the last ones came positive, but she is in a wheel chair and can barely speak now. So sad!

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 8/11/2009 10:16 PM (GMT -6)   
There are also a number of co-infections you can get at the same time as Lyme. Sounds like you need to be checked for those too. I "just" have Lyme but aren't those night sweats common for Bartonella?
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


fibrogal
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/11/2009 10:27 PM (GMT -6)   
I have had a cat for years, and certainly my share of cat scratches. I haven't seen a tick here, after moving from the South to the Seattle area, but have heard that they are certainly out in the woods. And I have spent a fair amount of time hiking and camping here.

I also keep goats, rabbits and chickens, but got them after the Fibromyalgia diagnosis.
any possible connections there?

This is my first attempt to look at the Lyme possibility, mainly because it was my mother's idea! :)
I am not sure if I want her to be right, or not, based on what I have been reading here.
You guys have gone through SO much suffering to get help.

My doc put me on anti-depressants, sleep aid, first a narcotic for the pain, and now Gabapentin. So the pain is better, but I am super dizzy, and it has not helped the other symptoms.

Thanks everyone for being so helpful, great community you have here!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/11/2009 11:05 PM (GMT -6)   
Hi Fibrogal,

Welcome to the forum!

Have you found a good Lyme Literate Medical Doctor yet? You should post your email so that members can tell you the contact info privately. You can also email one of our long time members, Ticker at:
ko_@bellsouth.net to find an LLMD in your area. If you'd like more suggestions, you can email: stephanie@turnthecorner.orgYou can also go to: www.turnthecorner.org/bod.htm and ask for further sugestions.

ILADS is also a great site to find information:
http://www.ilads.org/


For even more info, please read the topic at the top of the first page of this forum tittled "The Basics, Newbies check this out". It will help you get started learning about lyme.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


fibrogal
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/11/2009 11:10 PM (GMT -6)   
Thanks CajunGrl! I sent the email to stephanie, and read the basics thread first. I just wondered if I was even barking up the right tree, but sounds like I should at least dig deeper here! thanks again,

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/11/2009 11:16 PM (GMT -6)   
Hey Fibrogal,

I was also told I had fibro and CFS and suffered for a whole year until I was finally told I had Lyme. I do believe that some people have Fibro and nothing else but if you are questioning it, it's a good idea to get tested just to be sure. It's better to rule it out than wonder and not get treatment if it is Lyme. Lyme symptoms can get pretty bad and you can go downhill fast. Better to be safe than sorry.

If you want more recommendations for LLMD's, email Ticker at ko_@bellouth.net

She is very knowlegeable and can give you great LLMD's names.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 8/11/2009 11:19:33 PM (GMT-6)


fibrogal
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/11/2009 11:23 PM (GMT -6)   
Thanks for understanding! I just emailed Ticker. I asked my doctor to test me the last time I was there, and she became vague. No tests were ordered. So obviously going to a LLMD makes the most sense!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/11/2009 11:27 PM (GMT -6)   
It definitely makes more sense. Most regular doctors either don't know how to read a Lyme test or they don't treat long enough. Go to someone that knows what they are doing. Trust me....I've been there, done that.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 8/11/2009 11:45 PM (GMT -6)   
fibrogal
i was lucky in some aspects, as i had a MRI and it showed brain lesions. and 1 of the reason for it was stated as lyme. seeing as my dog was dx with lyme last yr i asked to be tested. my PCP did a WB and it came back positive for IgM. then my luck ran out. as there isnt 1 Dr here in Tx who treats lyme or even understands it really.

so if your able to see a LLMD, its your best bet for the right DX and treatment.
i was also sent to a Dr for my disability and she even asked me if anyone had thought of fibro. it does happen to many lymies.

the more info you have the better armed you are when dealing with your DR.

i just found this out from my Px there was a man here who had lyme, i was trying to find out who was treating him. well turns out the man died, and his Dr thought he has a stoke. he didnt it was from the lyme. this is so sad.i think DR make to light of lyme and when its left to its own we suffer for it, not our Drs, who should i think.

sorry for rambling on. i wish you well :)
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


RottenDog
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Date Joined Apr 2009
Total Posts : 1013
   Posted 8/12/2009 12:02 AM (GMT -6)   
oh and i also wanted to let you know i take gabapentin too and i also take meclizine 12.5mg 3x day for dizzyness. you may want to ask your Dr about it. it is also sold OTC.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


fibrogal
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/12/2009 12:09 AM (GMT -6)   
Meclizine? hmmm, more great info! thank!
I can't believe there isn't a doc in TX, considering all the ticks down there! Seems there would be plenty in the South!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/12/2009 12:14 AM (GMT -6)   
Doctors in the South think there is no Lyme here because of the humidity. I live in the South too. There are so many people suffering here. It's ridiculous.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


fibrogal
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/12/2009 12:42 AM (GMT -6)   
That's crazy! The south is full of ticks! I plucked them off constantly when I was a kid in Arkansas. My kids were trained to not get off the path, or walk through tall grass. When we moved to the Northwest, I warned some neighbor kids not to walk through the field or they would get ticks and chiggers. They froze, panicked. Never heard of a tick or a chigger before! :)

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/12/2009 1:02 AM (GMT -6)   
Scientist have recently found Lyme in chiggers. We definitely have that big time here.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 8/12/2009 7:00 AM (GMT -6)   
Hi Fibrogal and Welcome.  The others have already given you lots of great information.  I am another one who was diagnosed with Fibro. but actually have Lyme.  Definitely seek out a Lyme Literate MD.  It makes all of the difference.  You are definitely on the right track!  Good luck to you.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 8/12/2009 7:28 AM (GMT -6)   
Hi fibrogal,

It looks like you've figured out the abbreviations. Just in case- Igenex is a lab that tests for Lyme, and WB is the Western Blot, which is the blood test they do. Still not terribly accurate, but better than any other test.

I agree with everyone that it is a good idea to check out Lyme. IMO, anyone diagnosed with Fibro, CFS, MS, ALS etc. should look at Lyme- not because it's impossible to have just plain old fibro or MS, but because if it is Lyme, you can treat it, and get better.

I also have experience with doctors telling me I couldn't have gotten Lyme disease because there are no ticks here- even though there was an article in the paper about finding ticks with Lyme in the city where I go to school. When it comes to Lyme, the education for Dr.'s is so poor that even very good Dr's will refuse to consider it.

Keep us updated on how things are going! And welcome to the board.

Nicky

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 8/12/2009 9:30 AM (GMT -6)   
There are a couple of good LLMDs here in the Seattle area. NickyD goes to Dr. R (probably sees most of the Lyme patients in this area) and I go to Dr. M. I think I got Lyme in Tx or intermountain west before I moved here. Since I didn't have the rash it's hard to know.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


fibrogal
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/12/2009 10:39 AM (GMT -6)   
Stunned123: glad you found out what you really had! thanks for the encouragement.

NickyD: Thanks! I went to the website, but couldn't figure out how they get the blood sample?

Agmaar: interesting name. . .would that be the Witch King, the WarCraft Realm, or the Wookie World? :)
Just received the email back from Stephanie at Turn the Corner and she listed Dr R and Dr M, also a S, NP.
I did not ask if there was anyone over on the Key Peninsula, which is where I live, figured they are all in the city, which is a ferry ride away.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 8/12/2009 10:52 AM (GMT -6)   
Fibrogal- you get the blood taken at a regular lab (where you do other blood tests). Bring in the requisition form, because it tells them what they need (whole blood, Serum, spun, etc.). They may get confused at the administrative side, if they haven't seen one of these before, but usually the actual blood-taking goes smoothly. Igenex will mail you a testing kit for free.

Yes- I see Dr. R (I missed that you were near Seattle). I've only seen him once, but he seems wonderful- and he works a lot with international patients, which is great for me. And he does phone consults- so you only have to go in in person every 4 months. I was orginally seeing a ND (I think that's the same as NP in the US). But (personally) I felt more confident in the antibiotics route. Some people don't - they like the natural route. But it's important to consider that when choosing a doctor, as NP's cannot prescribe antibiotics. Of course, I also know (from Agmaar) that Dr. M is willing to refer people to Dr. R if she thinks they need more aggresive treatment.

That might be premature, since you don't know if you have Lyme, but I thought it might help

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 8/12/2009 11:09 AM (GMT -6)   
turn    you're the only one that's ever picked up on the name thing.  It's one of my world of warcraft chars.
 
Even if you don't have Lyme, Dr R and Dr M are both good to help you figure out what it is.  They both do hormone balancing and work with CFS and Fibro people.  They take a comprehensive approach.  They'll probably test for all kinds of stuff ...  HHV 6, Cpn, mycoplasma, heavy metals etc.  as well as hormones, thyroid, etc.  We found all kinds of deficiencies due to having an infection so long.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


fibrogal
New Member


Date Joined Aug 2009
Total Posts : 9
   Posted 8/12/2009 11:22 AM (GMT -6)   
NickyD: Thanks for the info on the blood draw, I was suspecting as much. I just learned that the NP in Seattle works with the MDs to get the antibiotics along with the other modalities.

Agmaar: Well, Rich, I have been teaching character design for Video Games for years, and am a LOTR fan. ;)
The MDs sound like they take the whole picture. I do not currently have insurance, so all that testing will probably set me back a couple thousand, but it will be worth it to find out!

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 8/12/2009 11:52 AM (GMT -6)   
Aha! I don't play WOW, but the name Agmaar sounded familiar. Now I'm kicking myself in the head for not recognising it sooner (must be lyme-brain). I am a big LOTR fan too.
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